Diabetes Soup: Thirty Years at the helm of Type 1

When I first started this blog, almost seven years ago I wrote, "My name is Anna and I am many things. I am a daughter, a sister, a friend, a fiance, a full time worker, a wannabe surfer, an animal lover and a girl. I am also a Type 1 diabetic (insulin dependant, juvenile onset, the beast has many names)... I have been through every stage of adjustment with the condition. I was the child who didn't quite understand it, the teenager who resented and fought it, the adult who started taking it seriously and now I am the girl determined to make it my own."

Thirty years ago on Christmas Eve, my parents brought me home from the hospital in Germany, newly diagnosed and with a challenge beyond anything they could imagine.  The magnitude of their challenge could not yet have been known to them, because only those who have lived through a chronic condition like diabetes could know how every aspect of life could be turned upside down by something as innocuous and seemingly toothless as a pancreas with no ambition.

Thirty years on, with almost a quarter of that time spent writing a blog and regularly exploring the sometimes inexplicable world of my own thoughts, I now know that I was naïve to think I was only one thing at a time. My ongoing states of diabetes  - the child who doesn't understand it, the teenager who fights against it, and the adult who has come to accept it - aren't mutually exclusive.  Sometimes I am a big bowl of diabetes soup (35g carbs, pre-bloused).

This year was the hardest of my thirty years.  With a child of my own now just three years younger than I was when I was diagnosed, I have had little time to focus on myself, but in the most wonderful of ways.  It is hard to care about the highs and lows, the carbs and counts or routines and basal reductions when my daughter's needs seem more urgent and important than my own.  For much of this year I was the mother who ignored it, because my girl was always one notch higher on the to-do list.

As my thyroid packed up shop and the sensor got lost en route to the outside of my leg, I was the adult who resented and once again didn't understand it.  I had a whole new language to learn about thyroid, iodine, overactivity and antibodies, and all those years of acceptance and embrace melted away in the face of the seemingly unmanageable tasks. Every day I worried about the what ifs and could-it-bes of my daughter also being diagnosed one day.  I can't think about that for too long, I have to let those thoughts drift away before the imagining the worst becomes my obsession that day. I found the DOC an overwhelming place to be and carried out a mass exodus of almost all of the diabetes groups I belonged to, sneaking out in the night like a shamed fraudster.  I didn't want to be in the DOC I once loved so much.  I was tired.  I still am tired.

 

But, as the tasks of motherhood became easier to manage and somehow my HbA1c kept steady at 7% (somethingorother in 'new money' mmol), I began to remember what I so loved about blogging. And as I was voted a respectable 62 on the Feedspot Top 100 diabetes blogs worldwide, the recognition flooded back that this is my safe place to say all the garbled junk I have to say, and that being a big bowl of diabetes soup with a million emotions spilling out of me - sometimes all at once - is OK. It's OK to be a diabetes soup sometimes.

I hope that in another 30 years I will be here still, living the life I have been blessed to live, and that diabetes will be a thing of the past.  But if not, I hope I will still have the thoughts to share, the words to write, and the voice to speak about my big old mixed bag of diabetes experience.

 

Happy diaversary to me, and Merry Christmas to all of you. 

ASW2K16 video!

I've posted over and over about the value of knowledge and peer support the Animas Sports Weekend brings and this year was no exception.  As I drove home from the meet in October, the sky blackening as the early autumn nights I so love creeping in, I wondered if the other drivers on the M whateveritwas had enjoyed a weekend as wonderful as mine.

 

Just take a look for yourselves...

 

And don't forget to check out what Sir Steven Redgrave shared when I asked him about the value of Dr Ian Gallen's work.
 

 

The Airport Security pat-down/throw-down/interrogation experience

I love to travel.  And although I find aeroplanes claustrophobic on account of my control-freak tendencies and there being 300 people on board, I find air travel exciting, terrifying and amazing in equal measure.  What I find less enjoyable is the veritable lottery of what kind of  frisk, detention, terror-threat suspect, 'experience' I will have at the passenger security check thanks to the diabetes paraphernalia I cart around in hand luggage.  Bizarrely enough when travelling with a pump six years ago, I rarely encountered problems.  I made it to Thailand and back to a friend's wedding on my first ever with-pump journey, without incident.  A usual 'show it, explain it, politely decline to have it x-rayed' mantra was enough to make it on board without an MI5 security team interview.  In recent years however, this has changed.

At Heathrow in July this year, a well-meaning-but-having-none-of-it security guard insisted repeatedly that, "Even pacemakers are fine in the full body scanner".  His persistent claims got louder and louder and more animated until it felt like there were exclamation points at the end of every sentence. It gets hard to be polite when someone wants to disappear with your pump after refusing to accept that it couldn't be scanned.  After losing sight of my pump he returned with it and confirmed, once again, that pacemakers can go through it.  I will of course bear this in mind - if I ever get a pacemaker. 

My journey home from Frankfurt involved three women taking me into a 'detailed check' (kit off, sans dignity) while they appeared confused, befuddled, horrified by my CGM sensor.  This was followed up by someone shouting 'random bag-check' as they carefully selected my bag from the conveyor belt, at 'random'.

The Dubai chapter of the book was inexplicable. Voices were raised, arms were waived and scowls were given.  None of the above perpetrated by myself.

Somehow I made it to America, post 9/11, with 42 hypodermic needles and enough insulin on board to hygienically murder and entire crew while my friend got stopped for a corkscrew, and yet an insulin pump and CGM sensor bemuses most security staff. And I know that one of these days as it is whisked away from my view (against my requests) it will be put through an x-ray machine.

I understand it, of course.  Only 7% of people with T1 diabetes use an insulin pump, and there are currently at least five separate types of pump on the market right now.  There are hundreds of other pieces of diabetes equipment alone and there are God knows how many for every other condition which get seen daily as the thousands of people come and go from the country - millions worldwide.  With terror technology modernising as fast as - if not faster - than medical technology, I can understand why a safety first approach is necessary.  And I'm glad they raise concerns, frankly, because I can feel safe in the knowledge that when someone comes through with a device which on closer inspection is suspicious, I know they won't be on my flight. 

But the question has to be asked, if medical technology of any kind does come through airport security on a daily basis, why is there not a single policy which is part of regular, standardised training?  And why is it not worldwide, in the same way that airport security is standardised worldwide? Yes, there are hundreds of medical devices out there, but when pump companies and hospitals produce letters about the handling of these items, why are their hosts under fire of multiple questions, in different ways, dependent on the day of the week it is, and who is on shift that day?

The issues are that the damage - or possible damage - done by the full body scanners to an insulin pump - which is effectively a small computer - is largely unknown.  I have watched a fellow blogger go into one wearing their pump without incident.  But the warnings are clear, and are agreed upon by all the major insulin pump companies (Omnipod is not affected).  Going through any surveillance procedure which uses this technology with a pump carries a risk.  But as it becomes more commonplace to use full body scanners as the go-to security measure in airports, this places people with diabetes using technologies which are growing in popularity in a difficult position: refuse and raise questions of your suitability to travel, or go through and risk your pump being exposed to potentially damaging x-rays. Just how global can your pump company deliver a replacement pump?

The good news is that change is afoot, with your help.  This topic was recently raised at the Animas Hero meeting a group I have the honour of being part of, as a number of people raised concerns over the mandatory introduction of full-body scanners at UK airports from December 2016.  The following conversations uncovered that Rachel Humphrey at the Universal Freight Organisation was working to raise the profile of this issue at an international level.  Rachel is in contact with the Head of Training at Airports Council International (ACI), who are in turn going to raise this issue in May 2017 at the ICAO (The UN agency for Aviation).  ACI have said:

“The information has been forwarded to ICAO (The UN Agency for Aviation) for their consideration and advice on the best way to raise the issue globally to screening authorities."

ACI will present the issue to the ICAO Aviation Security Panel in May, requesting that it is included in global guidance material. Additionally, ACI will continue to raise awareness with its members through its committees and circulars to airports."

Although many people travel daily without incident, many are also subjected to arguments, questioning and the process of having pumps removed and taken out of sight, due to the varying degrees of training as to how to approach the issue of unfamiliar (should be familiar) medical technology encountered at airports.  I have a 100% record for botched security procedures inn 2016, and as someone who can hold my own but gets deep uncomfortable at the through of being one of 'those' passengers, it's clear this isn't just a one-off situation. And for those using technology which is becoming more common place year-on-year, this has to change. 

If this issue is important to you or someone you love or care for, please visit the links below and look in particular at the petition linked in. And if in doubt, contact your pump/CGM maker for a copy of their letter explaining how their device should be handled.

The official position of Diabetes UK on airport travel with diabetes can be found here.

The petition for a standardised approach can be found here.

The current protocol for security when travelling from the UK can be found here.

Freestyle Libre CASE Giveaway! (UK Only)

Recently the lovely folk at Cara Collection contacted me with the offer of three beautiful cases for a Freestyle Libre Case Giveaway (UK only)!

Cara Collection make absolutely beautiful bracelets and accessories, but better still they come from a place of knowing about type 1 and wanting to make a difference using their skills and reach.  

I have THREE of their beautiful cases for a flash (geddit) giveaway on your favourite all-things-diabetes blog! 

Check out the full video for details, but if you want to get your hands on one of these gorgeous cases ABSOLUTELY FREE, all you need to do is:

1.  Enter why you just LOVE your Libre in the comments and leave a clue as to who you are (no personal details please, there are weirdos out there!)

2.  Send me an email at anna@insulinindependent.com so I can link up your  comment with who you are in case you are a winner

3.  If you are one of three lucky winners  - go ahead and enjoy your Libre in style!

Competition closes 16th October, 2016 at 6pm!

And don't forget to check out Cara's gorgeous webshop for stylish and gorgeous things you will love! They post to the UK and deliveries take just 5 days so enjoy the things you buy even quicker xxx

Off-label Dexcom use: Diabetes Gore and A cautionary tale (of a lump named Trump)

It was just like any other sensor removal - something which had become second nature over my 3-year Dexcom use.  Frustratingly on only day 6 of wear, the edges of the sensor tape had lifted off so much that when I rolled the dog-eared tape edges back and peered underneath, I could see the puncture site where the sensor pierced my skin.  Time to take it off.

 

I was a little annoyed because I hate removing a functioning sensor early, but since my daughter arrived I haven't had the time to continuously check that my CGM tape is still taught on the skin, and quite often I now lose sensors before they expire naturally anyway.  I have to pick my diabetes battles now that I am juggling a whole other life - one which has yet to learn about CGM sensors and why mummy needs to take five minutes to fiddle with Rock-tape and Skin Tac rather than read about gluttonous caterpillars and prowling lions.

 

As I pulled away the sensor pad and transmitter from my skin, the small puncture wound seemed nothing out of the ordinary: visible, but tiny.  I wiped the skin with a sterile wipe and carried on my day expecting the usual 24-48 hour heal-up time for the puncture wound to disappear.  But 48 hours later the small puncture wound was now a lump.  Barely possible to detect and seemingly innocuous, but somehow foreign feeling on my ordinarily flat outer thigh.

 

'What do you think?', I asked the GP on my first visit, because I had been warned that the thyroid medication I am on can react badly to an infection so I always needed to check anything suspicious.  "Let's wait and see, but I don't think it's infected." he purported. 

 

So I waited.

 

By the third visit. with my skin colour changing and my experience of the lump - now growing in size and thickening in texture - was starting to sour.  The experiment in waiting was now an hourly pre-occupation on my mind.  I was sporting what I was convinced was an example of part of a sensor being stuck in my leg. But my claims fell on deaf ears.

 

Trump - an unsightly,
strangely-coloured object with strange
ideas of world domination

"I'm sure it's nothing.  If there was something in there it would be hard or would work its way out." I heard, over and over.



I was told everything from "It's a bruise!" to "It looks like an abscess!", but no-one believed there could be anything left inside my leg, despite my protestations about just how tiny the foil-like sensors are. The thing made my leg look like the elephant man, but there was nothing inside, or so they told me.



By my fourth, fifth or sixth visit (I'd lost count by then) my leg, sporting a lump named Trump (big, ugly, discoloured beast unwelcome in its own land) was the stuff of my (actual) nightmares.  I would dream of legs being amputated or infections so bad I could no longer control them. My mood was already low and Trump was making life a darn-sight worse.

 

By the time I noticed something protruding from my leg, which when pulled at released a whole bunch of disgusting, and two small shards of what appeared to be foil-like sensor, I had seen two GPs over five visits, one diabetes consultant, the A&E department at QA Hospital and a walk-in clinic. I had been placed on antibiotics by the A&E department and was feeling like my leg would explode.



The GP finally got interested around the time that the wound opened, and has since then seen me every two weeks.  But this happened in May.  It is now September.  That's four months of my life spent worrying about how much worse this leg could get.  Four months of my life barely using Dexcom because I was still dealing with the damage of Trump the Rogue.  By the time it broke, and the antibiotics were flowing, my leg looked and felt like something from a diabetes Public Heath Announcement, and I felt just a little broken. 

 



Diabetes, don't do it kids...

It's been four months and the Trumpy Lump, complete with colouring of yuk and texture of gross, is yet to go.  I'm not sure if it ever will.  The whole experience has been less than enjoyable.

 

But here's the thing, I still love my Dex.  Even now, with the lasting effects of one gone bad, I love it.  Granted, I enjoy my Dex-free times now, but with a holiday just a few days away my thoughts are already on how many I'll need and how useful it is to have.  And how I miss it, when I have some paraphernalia free days.  Dexcom is an amazing tool, but its not infallible.  It can go wrong.

 

I emailed some of the pictures through to Dexcom because I decided they should see, and hear about, what I would be posting.  They replied and after a lengthy conversation with Dr Vitaliy Gisin, who called immediately on receiving my email, I got given this advice:

 

Dexcom advice

 

Firstly - if you think there is anything lodged under your skin, insist upon an X-ray.  Because of the angle that the sensor goes in, when some gets stuck in your leg, it has trouble working its way out.  In many people the body can just deal with or expel the foreign body, but as I have proven with my slightly broken, semi-functioning body (my words, not Dexcom's!) sometimes this can prove hard.  But an X-Ray would have shown the metal up bright enough to be sure, and could have been done some months ago.

 

Secondly - off-label is not OK.  Although I make no bones about my use of sensors for far longer than the 7-day label use, this has always been my choice, and I wouldn't advocate anyone else do it.  And although this sensor was on day 6, I used the outter part of my thigh.  This, Dr Gisin confirmed, is also off-label, and he recommended I return to using my abdomen.  My problem with this is that cannulas are painful to use in other areas and thanks to pregnancy, what little usable skin I have left is reserved for my cannulas.  This makes sensor placement tricky. But rules are rules.

 

Thirdly - and lastly, if any part of a sensor snaps off in or out of your body when removing - keep that sucker in a piece of tissue and send it back to Dexcom.  Dr Gisin was rather disappointed to have discovered I didn't keep the minute shards of sensor I pulled from my leg, as we will never know how or why they failed so badly on day 6 of wear.

 

So there you have it, my slightly-disgusting and depressing reason for posting pictures which shatter your image of my gorgeous pins (chortle).

 

Keep Dex-ing people, but do it carefully.

Depression, Complications and Diabetes: Seeing the signs

It's hard to pinpoint when or where it began but it's been creeping in for some time, and the feeling is all too familiar.  There is so much in my life to be grateful for; a wonderful family, a beautiful, healthy daughter, a good job and cosy home. I go on holidays and have had a rare, precious opportunity to spend more than a year at home with my kiddo before returning to work, something people all over the world would give their left arm for.   But when the early days of depression begin, it is rarely because of dwelling on what you lack. It is a complicated issue made murkier by the swings and roundabouts of blood sugars and diabetes complications.

I spent days Googling 'Post Natal Depression', confused that I felt none of the typical symptoms, but well aware that something wasn't right.  I felt deeply connected with my child, and although I relished  (good God, did I RELISH) the moments I had away from her for a break, I couldn't wait to hold her again and make absurdly disgusting fart noises just to see her smile. I was also in the 'easiest' phase of parenting so far, when she sleeps through the night and is predictable in routine in the day.  I was finally drinking hot coffee again, the house was tidy and I could indulge in whatever evening TV I wanted, with little chance of interruption.  But despite being unable to connect my feelings with being a few months postpartum, my mood was low: correction, is low.

To the outside world I still smiled and joked.  I gushed about maternity leave and posted happy pictures on Facebook, but inside my head was whirring full of emotions fuelled by blood sugar mayhem and fears about the future.

The earliest place I could pinpoint as the beginning was visiting the Opthamologist's office, being told that they believed my Maculopathy may be developing, and further tests were needed.  I guess they have told people this a thousand times, but for me it was a first.  Casually talking about my sight like it was a sandwich I might miss out on eating, we discussed treatment and risks like they were no big deal.  Blindness and amputation have always been my greatest diabetes fears, and hearing the words out loud, looking over to my daughter sleeping peacefully in her pushchair, my mind was spinning thinking how much I would stand to miss out on; how much I wouldn't see.

Each morning I wake with a jump as the two - now three - trigger fingers jammed shut on hand, horribly shocking and a painful way to start the day.  The only relief being an operation.  That to follow the two carpal tunnel operations I have already had and the double tendinitis which needed shots and still remains in one hand.  Pain is a powerful beast.

Add to that infected Dexcom site which may, or may not, still have a piece of sensor stuck inside  my leg since May which was viewed by five different medical professionals over five separate visits, before someone had to take my hand and tell me it would be OK, as my eyes filled with tears of terror and defeat.  Eventually someone prescribed me antibiotics. It took a visit to the ER and a million tearful 'thank yous', before someone took my hand.

The pain in my left foot, like walking on a stone, may or may not be a diabetes nerve complication.  It's hard to tell given that nerve endings are tricky things to look at.  But it makes even the most wonderful walk a painful affair.  Pain is a powerful beast.

In recent months I have had so much to feel joyful for, but even the most joyful moments have been dulled by the constant aches and pains of the complications which everyone tells me are 'just a part of diabetes'.  The drip-drip-drip of complications, pain and medical mysteries has left me feeling just a little broken, at a time in my life when most women talk about how pregnancy and labour made them 'think they can do anything', I feel nothing but all the things I can't do.   

"There is always someone worse off than you," Is a mantra I've tried to tell myself, but in the moments I spend trying to get out of bed without bending my fingers because they will snap shut with excruciating pain, or the moments where the GP sends me on my way telling me to lose weight, without investigating any of the issues further, I find it hard to take a whole breath.

I don't know if I am depressed.  But I do know that I am a person with diabetes coming to terms with the possibility of permanent chronic pain from repeated inflammation issues. I am the mother of a baby trying to get my head around the fact that my eyes might not keep going forever.  I am the 33 year-old who has to take each step down the stairs one at a time in the morning because her foot, and swollen joints feel particularly painful today. I am 'the diabetic' gasping of thirst because her postpartum tiredness meant she slept through the 'HIGH' alarm on her Dexcom, the Dexcom she currently resents because of the sensor-might-not-be-sensor still stuck in her leg.

I am human.  And part of being human is that I am feeling ever so completely 'diabetic', right now.  As though that is the biggest part of me. Maybe the only part - the rest having been chipped away by a disease I can't escape. I am afraid.  And that's OK to say.

I don't know what the future will hold, but I know that endorphins and 'saying it out loud' can only serve to help.  Small goals at the gym, spending time outside and perhaps re-immersing myself in the community I have turned away from will help.  

For now, it's just one day at a time.

Animas Sports Weekend 2016: Part Two

This May just gone I had a little too much going on to manage to make it to the Animas Sports Weekend.  So this October, when the new-format weekend takes place on 8th and 9th October at Loughborough University, I will be there with bells on.

 

The weekend has been going around five years now and continues to draw people in time and again. Those who are there for the first time build friendships that last a lifetime. Those who have been before, want to go again.

 

Sports Advice

 

Exercising with type 1, particularly for those unfamiliar with exercise or those doing exercise which pushes them to new levels, is a tricky business.  Hypos, hypers, aerobic, anaerobic, diet, muscle repair, insulin dosing: the whole shebang can baffle my brain.  I've been on a number of occasions thanks to the relationship I have had the joy of developing with Animas but every time I go, I pick up something new.  Each time the knowledge and research by people like Dr Ian Gallen (who helped Sir Steven Redgrave reach his five gold medals at the Olympics) and Dr Alistair Lumb, deepens and broadens, so even if you've been before, there is more to learn.

 

Peer to Peer Time

 

Undoubtedly one of the highlights for me in going to the weekend is the joy of mixing with other people with type 1.  Learning from them, laughing with them, synchronising hypos; every bit of it is a joy.

 

Very few events in the type 1 calendar give the opportunity to mix with so many people living the same condition, so this weekend is socialising gold. It literally leaves you with the warm and fuzzies and 'fills you up' for months more living with diabetes.

 

Inspiration

 

Ever heard of people like Roddy Riddle, the type 1 Scotsman who made the 150 mile Marathon De Sables his bitch?  Or Claire Duncan who takes on ocean swimming or coast-to-coast in one day cycles (this woman eats marathons for breakfast)?  The team of speakers that Animas puts together could inspire a nation to get on their bike and give it a go.  And best of all, they are ridiculously wonderful people to spend a weekend with.

 

Alcohol

 

Because, there's a bar, obviously (hic).

 

How to get registered

 

Whether you are new to exercise, struggling to manage blood sugars in your normal exercise routine or stepping up to the plate for that marathon you always wanted to do, this weekend is for you.  The exercises are adaptable for those just wanting to try them out and for those wanting a challenge.

 

Registration for the weekend starts on the 1st August, when the link on this page will go live.  Spaces fill quickly so don't sit on the fence - hurdle it and give it a go.

 

Want to know more?  Then I guess you'll just have to come and see for yourself.

 

See you on the 8th October!!

 

Be anything you want to be...

I have very mixed feelings about Theresa May. On the one hand the industry I work in has been decimated on a scale far greater than if she had driven a steam train into Piccadilly Station and set off an atom bomb. Morale is at an all-time low and the derogatory comments and smears she has made of services I treasure, such as the Police, are unforgivable. On the other hand, as a person with type 1 diabetes in a public role, she flies the flag bearing the mark of diabetes. 

I often think about the 'what's ifs' of my daughter one day developing type 1 diabetes. She shouldn't, given that she has just a 2% chance of developing it, but the chance is always there. Raising a child with type 1 can be a tricky business, and in amongst the challenges about self-management, maintaining blood sugars, issues with food and trying to manage a long-term chronic condition, come questions and identity challenges about what you can and can't 'be'. Aviation and emergency services are just two of the careers marred by limits on who can do them, and usually people with diabetes need not apply. 

Had you told me as a girl of just four, hands too small for the cumbersome blood glucose meters of the day, whose life had been irrevocably thrown into a veritable typhoon of diabetes, that she could one day have a job like being the Prime Minister of England, I would beamed from ear to ear.

The fact that the next would-be Prime Minister of England has type 1, is a landmark for people with the condition. People like Halle Berry, still causing merry hell by telling people that she was a type 1 who 'weaned herself off insulin' (God, give me strength) means we may finally have a 'real' face of the condition. Even if that face is one whose political decisions I have disapproved of, deeply. 

The one good thing out of the political turmoil and social unrest in our county is that one day I may have to convince my daughter than she can be anything she sets her mind to, and that can even be the Prime Minister of England.

Dexcom: Gen 6 and beyond

DexCom has always been a market leader in Continuous Glucose Monitoring; that's just a fact. While there are some fantastic sensors out there, for example, the Enlite sensor by Medtronic and the Freestyle Libre by Abbott (not strictly CGM but as close to and for many a more preferred way of engaging with their glucose levels). But, DexCom has always been just a hair breadth ahead in terms of accuracy and length of wear of sensors.

The exciting news from camp DexCom is that they are set to increase that gap even further with longer wear, an improved inserter (leaving 'the harpoon' in days gone by) and less calibration needed. And that is just Gen 6 (we are currently stealing through Gen 5 unless you are an old-skool Animas user like myself, who still rock out to Gen 4!) 

The full list of improvements can be found below, and are a fine example of how forward-thinking at DexCom raises the bar for everyone else. 

Enjoy! 

https://www.diabetesdaily.com/blog/a-look-at-dexcoms-upcoming-6th-7th-generation-cgm-tech-284530/

Dario: The changing face of home glucose testing

I have a confession; for the last few months I have wanted nothing less than to engage with my diabetes.  Burnt out from having a baby and managing thyroid issues on top of diabetes, I've retreated completely to the land of head-burying.  CGM sensors have been stacking up in my paraphernalia cupboard, and my transmitter is lost somewhere in North Wales following a holiday where diabetes was ignored to an impressive extent.  As diabetes week appeared on the horizon I had nothing to say, and thought it had nothing I wanted to pay attention to. Or so I thought, until along came Dario.

 

I was contacted by Dario about their glucose meter and asked to review it.  I agreed, aware that diabetes week was a great deadline to have my thoughts on paper.  Little did I know that inspecting their device would lead to testing more regularly and a hugely positive SHOVE back into the land of looking after myself - slowly, but surely.

 

So here is the detail.

 

The Meter

 

The Dario glucose meter is a palm-sized device which turns your smart phone into a glucose meter*.  Everything needed for the test - strips, pricker and smart-phone adapter - are all contained in the stylish case, which fits comfortably in my handbag giant baby-sack.  This works alongside the Dario app which can be downloaded from your smart phone app store. You can buy the meter from Advanced Therapeutics for £14.95, or ma be able to get one via your diabetes team if they stock them.  The test strips are also NHS approved.

 

The App

 

The Dario app is ridiculously pleasing to use. Rather than the typical 3, 2, 1 countdown, the six-second test shows on the screen in a buffering-style circle, which makes it somehow less ominous than the dreaded countdown.  This might sound ridiculously tiny as a detail (I mean seriously it is), but the first time I used it I was surprised at how pleasing the on-screen detail is.  Even my husband who has no preferences whatsoever when it comes to anything diabetes, perked up and agreed how the design was aesthetically a little bit of a treat (is it totally weird, the things we 'like' about our technology?).  The App itself is self-explanatory in use and has some great features like the ability to log food (fairly standard these days) and exercise (something I missed enormously when One-Touch removed that function from their testers) and a handy counter for hypos and hypers along with the usual average glucose range.  All-in-all, a job well done.

 

The good

 

Self-contained and all-in-one, this meter does what other smart phone-compatible testers have, in my opinion, not done so well.  It is sleek and convenient, and small.

The app is very well designed and extremely easy to use.  I didn't even bother with the manual as the kit was so easy to use.

The size makes this a really good bit of kit for a mother who is already weighed down carrying god-knows-what for my bundle of joy.

 

The bad

 

As a fumbling-bumbling-mum-of-one I often forget to charge my phone.  It's just not really been a priority for the last eight months and I have, on a regular basis, found myself without any battery.  If this happens, the meter is (very obviously) useless.  This only happened to me once while I was testing the device, but it was while I was out and about with my daughter, and I was due to start driving which in the UK comes with a strict caveat that we test before driving.  Luckily I was still packing my other meter so was able to test.  My advice?  If you think this is the meter for you, carry a spare charger for the car. 

 

The only other negative for me was that I use Diasend regularly to share my data with my diabetes team.  I have not found a way to share my Dario data (if you know how, please drop me a line to anna@insulinindependent.com) and for me this is a really key feature and I would love to see Dario introduce this as a feature.  If they did that, along with a spare car charger would make this meter perfect.

 

Would I use this meter?

 

Absolutely, yes.  It is a space-saving well thought out device and a pleasure to use.  My new-mum clumsiness mean I may stick to my regular battery-powered meter until I can get my Megan Trainor on and be sure that I have all the right chargers in all the right places, but this is a really good device.

 

Drop me a line and let me know what you think if you decide to give it a go. Happy Dario-ing!

 

*Boring fine-print - available for iPhone: OS 6.1 or higher: iPhone 4, 4S, 5, 5S, 5C, 6, 6 Plus; iPod touch 3rd & 4th generations; iPad 2, 3 and iPad mini; iPad with Retina display Android (OS 4.1.2 or higher): Samsung Galaxy S2, S3, S4, S5; Samsung Galaxy Note 2, 3; LG/Google Nexus 5

Thyroid issues? The more the merrier.

Having a baby is like setting a bomb off in the centre-most part of your life.  Everything gets blown to smithereens and scattered around, and chaos ensues.  It's marvelous, in the most 'Armageddon' type way you can imagine.

By four months old even during her most sleep-resistant nights baby McP was doing 3-4 hour stints in between wake-ups, and a routine had started to emerge.  I was told it would take about 4 months to start feeling a little more normal by my more experienced baby-mama friends.  Only at four months exactly I started feeling worse.

My self-raising world-exploding  bomb

Just as I had started to figure out her arse from her elbow (and my own, for that matter), and life had begun to become manageable again (meaning I showered once a day and didn't leave the baby in the Supermarket by accident), I was hit with an overwhelming wall of illness.  If Jamie or my mother were around, I would fling baby into their arms and slump into bed for anything from 3-6 extra hours of sleep each day  

My heart was racing all of the time and stairs left me panting and dizzy at the top. My vision was blurry and my blood sugars all over the place, having already jumped from 6.1 - 7.2 HbA1c since the whirlwind arrived. My blog, advocacy work and consulting had all but disappeared. But it was the fact that my daughter was practically raising herself meant I had to get things checked out.  

Symptoms explained and blood drawn the results came back with a bump.  My last thyroid tests taken only six weeks before my symptoms began had been absolutely fine.  My latest ones showed my T3 and T4 to be as much as four times the levels they should.  And the hyperthyroidism diagnosis followed.

The job at hand at the moment is to find out why it happened (in the hope that it may be temporary) and how to manage it alongside the 'normal diabetes' (whatever that may be) and current lack of hypo symptoms (yay!).  Thankfully the beta blockers mean the pounding heart no longer makes it feel and sound as though I have a little man running around in my head, and I am no longer pounding along at 100 miles an hour.

And hey, when it comes  auto-immune disorders, it's the more the merrier, right?

Anyone else living with this and able to give an old tired girl some tips?

New UK Dexcom shenanigans

Until now the use of Dexcom Continuous Glucose Monitoring in the UK has been through distributors, mainly Advanced Therapeutics for those using the G4 system with the separate receiver, or for those on the Animas Vibe, which has integrated Dexcom CGM, we could purchase directly from Animas.

However, as from this Monday, 16th May, 2016, Dexcom will be distributing themselves in the UK, meaning changes to the way its done and most importantly, new pricing.

From now on there will be no postage charge (which at a steep £6.95 per delivery would have been an extra sensor and up to one months use, per year), and single sensor cost has been reduced to £61 per sensor, or £246 for a 4-pack.

Below is the official letter from Dexcom with formal price list (***screams at Google Docs while trying to create document***).

And perhaps the most important thing you need to know is that the distribution has been taken over by Karen Baxter, formally of Animas Marketing team and one of the key figures in the creation and running of the Animas Sports Weekend.  I have known Karen for four years since first attending the Animas weekend a the blogger for the event, and know personally of the passion, dedication and second-to-none service she will bring to the Dexcom team.  Your service is in good hands.

Here are the details in photo form, because even threatening to throw my laptop across the room did not yield a suitable Google document...

Close calls

This weekend I was reminded just how invaluable my Continuous Glucose Monitor (CGM) really is, and of how precarious the balancing act we have to live by really can be.

I love gym classes - anything by Les Mills, really, but particularly the Body Combat series.  Structured as separate 'tracks' to loud music, it is a high-intensity class which makes me feel strong and powerful - in a flappy-armed, mistimed-stepped kind of way.  I am 'that girl' who can be seen close enough forward to see the instructor without squinting, but far enough in the corner not to stick out like a sore thumb when then instructor shouts 'Right!' and I go left, with great conviction, into the oncoming traffic of coordinated folk.  But no-matter that my actual combat ability is second-to-everybody else, I love the class.  And it gets results.

Since the birth of the small my weight, body image and fitness levels have started to bother me on an increasing scale.  It won't be long before the beautiful whirlwind becomes mobile, and while I am pretty fit for my size in a gym class, crawling around on the floor and helping her beautiful, fascinated soul discover the world is a no-go at the moment, so I have every motivation to get back to the gym.

Two nights ago I hit my favourite Body Combat class.  I had told myself I would 'go easy' so had lowered my basal expecting that my blood sugars would drop like a stone in a mid-intensity range.  Twenty minutes in and with music blaring, sweat pouring and calories burning, I was giving it all I had to give without a second thought. The funny thing about having children is that suddenly a gym class, one I may normally have groaned my way through constantly checking my CGM because it was all I had to worry about, becomes an hour of God-given freedom.  Without even realising it I had forgotten all about my diabetes and of taking off the reduced basal - one which would now be far too low given the adrenaline steaming around my body.

Post exercise blood sugar debacle

Back home two hours later and I was frustrated at the high sugars I should have seen coming. SRSLY!! I'd had the best time at the class, my ears still ringing from having edged too close to the speakers, but I now faced the prospect of sleeping with a BG heading skywards, so I took a cursory 2.5 units to bring it back down again, and headed to bed.  

I am incredibly grateful that the Dexcom has a 'last chance saloon' alarm even when in quiet mode.  I've had it on quiet mode ever since the small arrived for fear of waking her up, but at 1am two nights ago something sounding like my Dexcom alarm stirred me from a deep, deep sleep.  I recognised it as the one, long, loud beep telling me my readings were too low for the Dexcom to read.  As I opened my eyes, that feeling instantly hit me.  I could feel myself already convulsing.

I stumbled out of the bedroom as quickly as I could to get away from baby's cot, and got myself to my living room, Jamie swiftly in tow.  I had managed to drink a bottle of Lucozade before getting out of the bedroom, but something was badly wrong.  By 1:05 I recognised my mother's voice at my side (there are benefits to living like modern-day Waltons), but could no longer see and had immense feelings of panic striking through me.  Sat on the edge of the sofa, pale as a sheet and barely conscious (I am told), I could feel the convulsions, each one feeling as though someone was shaking me at my shoulders. I became aware that my mother was on the phone to the ambulance service.  Out of the corner of my eye I could make out Jamie unwrapping a Glucagon injection.  After what felt like a lifetime I started to regain my sight, and my breathing slowed.  As my mum finished her call to the ambulance, still on route to give me an MOT, the tears started to stream.  Why does it have to be like this?

NHS MOT: Still alive and kickin

After a visit from two of the most professional, warm and comical ambulance crew it was decided it was safe for me to stay at home.  I'd had two good BG readings since the ambulance had arrived, I was making sense and I had a ridiculous number of people around in case of a second emergency.

 My full MOT (courtesy of the NHS) came back peachy, and I seemed to be on the road to recovery. But I still felt fragile.  I still feel fragile, emotionally and physically.

I often wonder what I would miss least about diabetes if a cure came about. Would it be the daily grind? Wearing medical devices? The blood tests?  For me, it's the close calls.  The times when my mortality is put to the test, or I get a glimpse of what heading into a coma feels like.  The total loss of myself in a hypo and that dreadful feeling of, 'What if?'.

I am confident that my CGM saved me from an unconscious hospital trip that night.  Had I not been stirred by the CGM's 'final call' alarm, I doubt I would have awoken.  It wasn't my symptoms which woke me, and I was so tired between the demands of a five month-old and the recovery sleep of an excessive gym session that nothing was bringing me out of that sleep.  I've sometimes wondered if CGM really would save my life given how good my symptoms have been up until now, but two nights's ago I saw firsthand how one little alarm can give you that five minutes head-start on a vicious hypo, and can save a life.

It's the close calls I could happily live without.

Sainsbury's apology

Yesterday I posted about why that card represented all that is wrong with using diabetes as a punch line. Within a matter of hours of a diabetes advocate, Diabetes Power's Angela Allison, posting a picture online of a card she had seen about diabetes and obesity on the shelves of Sainsbury's greeting card section, hundreds of people with diabetes - or those speaking on behalf of someone with diabetes - had launched their complaint with Sainsbury's chief exec, Michael Coupe. 

In a glorious display of the power of social media and a really pissed of bunch of PWDs, Mr Coupe had issued a sincere, warm and humble apology. It went like this: 

"Dear Anna

Thank you for getting in touch.  Firstly let me say how very sorry I am for what has been a lapse in judgment, I completely share your views.

As soon as this was brought to my attention the product was removed from sale across all our stores, and I have this morning asked my team to investigate how this happened.

I pride myself on our values and I do believe our values make us different from other supermarkets, and I know our customers share that view, this is what makes this all the more disappointing.

Thank you again for bringing this to my attention.

Mike"

Hats off to you, Sainsbury's, and thank you for recognising why this card is below the high standards you usually meet. 

Stigma, diabetes-shaming and that joke about Bob.

I used to find jokes about diabetes funny; especially that one about Bob.  I liked it because it was sarcastic and witty, and there was no conceivable way anyone would think chocolate could cause diabetes.  That's what was funny about it, no?  My favourite blogs were ones which used humour to talk about life with diabetes, and my family and friends shared in-jokes a-plenty about diabetes and the many foibles living with it brings. But then something changed.  

Sometime around my late twenties people stopped asking "What is diabetes?", when the topic inevitably came up as my paraphernalia appeared, and instead people started to ask me questions about what I did to get it, or tell me they had known someone who got rid of it (chortle).  In my late twenties at University came questions from seemingly intelligent friends about whether or not I knew that my 'foot was going to fall off' from eating a chocolate bar (thank you, Scrubs), and then along came MatthewWright-gate when angry online conversations were held about 'diabetes-triggering 'Easter Eggs. Suddenly it wasn't so funny when I realised that people did believe it and that worse still - the hobby of diabetes-shaming had begun.

This year I will reach 30 years of having lived with type 1 diabetes.  I was diagnosed long before the internet, Sky TV and smart phones came about, and if we wanted to learn anything about diabetes we had to look it up in a giant book warehouse called a library (Google it). Since then with the dawn of the technological era, information can literally arrive at your fingertips with the flick of a button, the ping of a news alert or by the dulcet tones of Siri.  And information equals education, right? Sadly, no.

Jamie Oliver: Anti-Diabetes Warrior

When I was young and diabetes was raised in conversation, my clumsy 11 year-old self would try to give the best definition of what I was living with, hoping it might make sense. I hadn't yet thought of Jeff.  But now that people can easily find photos of the loveable Jamie Oliver standing in front of a coke bottle with the word 'diabetes' blamefully written on the side, or shop for tasteless greetings cards at Sainsbury's where diabetes is once again the butt of a joke, it has become publicly acceptable to use diabetes as a punch line.  With the era of accessible information also came the era of misinformation, and the blaming of people with diabetes for their own condition.  Suddenly everybody's an expert, and diabetes is fair-game for ridicule.

I recently took to Social Media to ask Sainsbury's for a conversation about that diabetes card (and also of course to ask where I can pick up a piece from their emphysema range, or if the do an asthma-specific selection), because the joke just isn't funny any longer - not when people struggle to separate truth from ridiculous humour.  I have been accused of lacking a sense of humour and of needing to lighten up, but here's the thing, if teenagers stop being bullied due to the image that 'diabetes' now has, or people with type 2 stop living with constant stigma as a result of me temporarily shelving my sense of humour and arguing the point, so be it.

The fact is the Sainsburys card isn't even particularly offensive. It's tasteless at worst.  But it insinuates and represents everything which is wrong with the way diabetes is treated both in the media and over coffee-table conversations around the world. We've come such a long way in thirty years.  Technologically we are in the most exciting season of diabetes. We are in the Summer of  advances in medical equipment and hope for a 'cure'.  But when it comes to diabetes-shaming and the way in which diabetes is used as comedy canon-fodder, we are firmly mid-Winter. We have learnt nothing in the last three decades. 

The answer is seven; Bob has seven candy bars.

Spare a Rose: Save a Life.

There are times in life - when my cannula rips out on a kitchen counter, or my Dexcom itches at my skin from lack of air under the over-used tape - that I find myself feeling less than grateful for the medical technology which keeps me alive. When the clumpy pump won't hide under a slinky top, or my Dexcom sensor protrudes from my leg under my skinny jeans like some kind of bodily 'yuck', I find myself frustrated with diabetes and the cyborg 'kit' that comes with it. But the truth is, that 'kit' - that expensive, wicked clever kit - does more than just keep me alive, it helps me live the life that I want; the life I deserve. 

It's hard to imagine, given my fortunate life in a developed country where it is considered wholly unacceptable for any person to have to die from lack of basic necessities like insulin, that there are children and young people in this very world - the one we share with them - who live on a constant perilous precipice.  Why?  Because they don't know whether or not they will have enough insulin to keep them alive today. 

This situation, which millions of children around the world face on a daily basis, is not only unacceptable, it should be impossible.  No child should die because of lack of access to insulin. Every child deserves to live, and not in constant anguish or fear that today may be their last. Every...single...child.

A group called Partnering for Diabetes Change, came together a while back to see how we, the diabetes community and the wider population of the world, can help.  That's when the 'Spare a Rose: Save a Life' campaign was born.

The Spare a Rose campaign invites people around the world to donate the cost of just one rose on Valentine's Day, just £3, to the International Diabetes Federation's Life for a Child programme which provides insulin to those living in developing countries.  That £3 will keep a child alive for a month.  That romantic bunch of roses, will keep a child alive for a year.

Last year $25,579 was raised, from donors in 684 countries, which kept 426 children alive for a year.

On Valentine's Day, why symbolise your love for someone by buying them something which will whither and die within days, when you could declare your love with a gift which will grow and thrive for a year.  Give life.

Spare a Rose: Save a Child.

Bra shopping and Trainspotting

I've reached the stage in life where my brain is officially full.  Not with useful information or anything which could contribute to a long and happy career, of course.  Quite the contrary; I know nothing of politics, science or history, but ask me the theme tune to 'Captain Planet' circa 1991, or what PSSO means in knitting, and I truly come into my own.  The problem is, due to being full to the brim with theme tunes, lyrics to every Julie Andrews song and the detailed workings of how to make a strawberry smoothie (it's all in the yogurt), in order for new information to enter I have to go through what is officially (not even a little bit officially) called 'brain leakage'.

When I gave birth to the little three months ago, brain leakage of momentous scale took place.  Out went information like how to access my online banking, mathematics and the location of my car keys, and in came how to put on a nappy, the theme tune to Rasta Mouse, and who the hell Macca Pacca is.  As a result of this mass leakage, other key knowledge was lost - like why I had previously always packed spare infusion sets wherever I went.

The thing about people living with diabetes is that we are nothing if not resourceful.

It was shortly after lunch I ripped my cannula out today when a careless trouser waist-band re-adjustment manoeuvre took place.  I was an hour away from home spending a rare few hours with my best friend, buying bras to fit my post-baby body (see also: small refugee family could camp in the cups...).  I was desperate not to go home, but with an abundance of insulin in my possession and no way of administering it, I feared our day together might be coming to the most swift of ends.  Unsure of whether or not I would be successful, we hot-footed it to the local Boots, hoping that our foray into the world of well-fitting bras wasn't the end of our fun today, if we could only secure a hypodermic needle.

I explained my predicament to the pharmacist as she asked me questions about which kind of needle I would need.  Sadly that information was lost in the official (not official) Brain Leakage of 2013, when I got a new job. But between us we managed to establish that 'nothing fancy' would do.

"Would you like one of the drug user kits?" she asked, helpfully.

Slightly taken aback but glad there might be an option, I rummaged through the kits given out free to intravenous drug users in a bid to encourage safer and cleaner ways of using drugs, if they must.  With a veritable Pandora's box of thingameejigees, I eventually came across an individually wrapped  hypodermic needle.

"Perfect!",  I proclaimed as an examination of the needle showed a clear gauge on the side which I could use to draw up insulin to the correct amount.  Sheepishly (but gratefully) I tucked the kit away into my bag, hoping no-one with a knowledge of drug use might see me excitedly fumbling through the kit. 

Luckily, the lady in Boots saved my day, and my diabetes, a great deal of hassle.  On arriving home I was a happy 4.4 mmol, and pleased that I'd found a workaround for not having been prepared. But having learned today that carrying a spare cannula in my bag is absolutely vital, I only dread to think what else has now leaked out of my too-full brain...